It’s been nearly a year since the EveryLife Foundation for Rare Diseases released its expansive report finding the total economic burden of rare disorders in the U.S. to be nearly $1 trillion.
News
Shorter telomeres — the protective ends on chromosomes and a marker of aging — were observed in people with systemic sclerosis (SSc), particularly among those with lung fibrosis (scarring) or anti-topoisomerase-I autoantibodies (ATA), according to a recent study. In a mouse model of scleroderma, treatment with GSE4 —…
The Fatigue and Activity Management Education in Systemic Sclerosis program — known as FAME-iSS — lessened fatigue and increased the use of strategies for managing what researchers called “one of the most prevalent and disabling symptoms of systemic sclerosis,” a small study reported. FAME-iSS involves group sessions led by…
Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends, and advocates from around the world to raise awareness and improve equity for the more than 7,000 known rare diseases that affect more than 300 million people. In 2022, the…
Levels of the protein, galectin-3, are associated with heart involvement in people with systemic sclerosis (SSc), according to a recent pilot study. The protein could be used as a biomarker to more quickly detect and address cardiac problems. Another protein, called soluble suppression of tumorigenicity-2 (sST2), was…
High levels of a form of the CD146 protein, normally found on endothelial cells — those that line blood vessel walls — may be a potential biomarker in identifying people with systemic sclerosis (SSc), a study suggests. Certain forms of the protein are implicated in lung scarring (pulmonary fibrosis)…
People with systemic sclerosis (SSc) vaccinated for COVID-19 fare well, with no serious adverse events and a low rate of reported flares, according to an international survey. “To our knowledge, this is the first large study that details experiences with COVID-19 vaccines in systemic sclerosis. Vaccination was safe in this group,”…
Acazicolcept (ALPN-101), an experimental therapy that blocks T-cell activation and is being developed by Alpine Immune Sciences, was found effective at decreasing scarring in mouse models of systemic sclerosis (SSc). A team of scientists at Alpine and other institutions published their findings in a study, “…
The U.S. Food and Drug Administration (FDA) has approved a clinical trial to determine the safety and efficacy of adipose-derived regenerative cells (ADRCs) for the treatment of hand dysfunction in patients with diffuse cutaneous scleroderma, Paracrine has announced. The Phase 3 trial, called STAR…
Slowing the decline in lung function, even small reductions, may prevent hospitalizations in patients with interstitial lung disease associated with systemic sclerosis (SSc-ILD), according to a post-hoc analysis of the Phase 3 SENSCIS trial. Researchers found that a greater decline in lung function is significantly associated with an…
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